here is how my appt with 2nd opinion rheumy went

[LisaInMidwest]

In short:

you have hip bursitis, here are some exercises

there are 2 more blood panels your 1st rheumatologist didn't draw. we'll get those done today. (dsDNA and anti-ENA)

your rashes are atypical for lupus, you should go to a dermatologist for some biopsies.

your symptoms are too non-specific to diagnose right now. be thankful for that because you don't want lupus.

we don't treat fatigue (with immunosuppresants--she never mentioned plaquenil). also, I can send you for a lip biopsy if you want but we treat sjogrens with what you are already doing for your dry eye and dry mouth. so, a test that invasive isn't really worth it.

see a rheumatologist in another year. me or the doctor which is closer (the first dr.) which ever one you want. although, if you end up with lupus your not going to want to have to drive 2 hours for every appointment so you should go back to the other doctor.

the end.

[warmwaters]

How are you feeling about this?

[Kathy57]

Wow!  I would be upset with that response😡.  Did you ask about Plaquinil?  I suppose that would have not changed his mind.

So sorry that you had to experience this denial of your symptoms and illness.  Where do you live in the Midwest?  Maybe someone close by can recommend a much better physician?

Kathy

[LisaInMidwest]

I never implied I had lupus (she asked specifically if there is lupus in my family history-I have a cousin with it) and I never asked for any drugs of any kind. I was hoping that maybe there was enough evidencefor a sero-negative diagnosis of (probably) sjogrens. and I have heard plaquenil can help with some of those symptoms.

I'm in Iowa. Right now i'm debating about the dermatologist. I think one lesion is granuloma annulare and she thought the same. the other rash I get looks like it may be nummular dermatitis. (my guess, not hers). I have to think on it because to go and spend the money at another specialist and not get any definitive answers is kind of heart breaking every time..

so, this morning I had my good cry knowing this is not going to get resovled any time soon and then I try to move on to just trying to keep doing what i'm doing until something changes.

[lorigacc]

  I so know what you are going through.   I see quite a lot of doctors because of my various autoimmune issues.  Within the past 2 years, I've had experiences much like yours, with at least three doctors.  I see a hematologist for my antiphospholipid syndrome. I have blood work every 6 months to make sure my numbers are good...and they have been (thank god). The other day she acted like I was bothering her being there. She said " I don't know why I even have to see you" (in a negative tone). I am having problems with my eyes, and being on Plaquenil, I was worried. I asked my rheumatologists nurse if I should stop the Plaquenil until I see my eye doctor, just in case. His nurse said his answer was "you can stop the Plaquenil if you want"...IF I WANT? Thought I was asking for a professional opinion?  And finally....saw my eye doctor yesterday. Told him about what I was feeling with my eyes (pain with movement and slight vertigo).  He told me it wasnt my eyes, but my inner ear.  I know for sure whatever it is...it is definitely with my eyes.  I have had so many negative experiences.  Not sure if I should start sticking up for myself (if its worth the stress and effort with there demi-gods), or just make an appointment with Johns Hopkins or UPenn and be done with it.  What is it with doctors these days? 

[LisaInMidwest]

loriacc,

sorry that you've experienced the same thing, it's so belittling. I have see it too at the GP as well as the  hematologist, neurologist, endocrinologist...lol. i'm running in circles and also running out of "-ologists"

it's exhausting and demoralizing to be sent from one to another...only to be asked why you are there.

I understand this is the common fight of those people with chronic illnesses and it a shame. My health has been called "complicated" by several doctors now, but no one seems to be able to help me.

Lisa

[lorigacc]

Thanks for letting me vent on top of your vent In all seriousness though, it is a common fight amongst us.  Only those of us who live this can truly understand. 

[Deb 27]

Lisa, I am sorry you got that kind of treatment. It seems like the doctor just blew you off-:(((

When my old rheumy at Mayo clinic retired, the new one did that to me. I didn't go back to him and got another rheumy. It's so frustrating but sometimes you do come across a health care provider who treats you with dignity and respect.

I had a lip biopsy and it wasn't that bad. That is how I was diagnosed. Not everyone has a good experience with a lip biopsy though, I've heard some bad stories. For me, it was well worth it. If you do decide to get one, make sure you go to the doctor first and ask them how big of an incision they make and where. Mine was small and they took two glands out that were very small.

[LisaInMidwest]

Thank you for listening and for the imput today.

Got lab results and both the anti-ENA and dsDNA (12.3, where anything under 30 is negative) were negative. I'm not at all surprised.

So my big question now is do I go to a dermatologist for those skin biopsies (forearm and back of elbow)

[SjoGirl]

Oh Lisa, I'm sorry. Hang in there, I've learned you have to kiss a lot of frog docs before finding the right ones. Sometimes too other symptoms need to pop up before one can be diagnosed.

[LisaInMidwest]

side note: the online notes from the appointment list the dx as ANA positive. Bilateral trochanteric bursitis and myofascial pain.

The myofascial pain threw me off but now I remember she said she thought my chest/rib/shoulder/neck pain was caused by something but I couldn't remember the word! Lol

[angeldancer]

Wow.  So sorry you have not had good experiences in this journey.  There is a lot of doctors that do not want to spend the time figuring things out for us.  Today I went to a Chinese Acupuncturist and Herbalist.  I need something to make me start feeling a little better because my doctors are always on a wait and see and by the time I wait something worse happens.  It is annoying but just know we are all here.  We are all fighting.  We just can't give up.  You are more than what you think and some doctor out there will take you at your word and will want to dig in and help find you solutions.

Angel dancer

[irish]

Check the yellow pages for dermatologists and then call and talk to the receptionist or the nurse. Find out how many years they have been practicing and if the dermatologist deals with many autoimmune diseases. You ask the questions you feel you need to and then can make a choice on which doc you want. Make the appt. for the rashes and when seen ask if they can be biopsied to identify if there is inflammation involved. The doc may indicate this action before you even think of it.

I had my first autoimmune disease diagnosed by a dermatopathologist back in 2002. I was in misery with a 13 cm plaque on the back of my arm. It was really bad and no doc knew what to do. Finally got into the derm doc and he biopsied and did cultures and biopsies. I had a bacterial and fungus infection and biopsy came back Bullous Pemphigoid.  I was put on prednisone short term and antibiotic and fungus cream. Took me another year for diagnosis of Sjogrens and 3 more years for diagnosis of Myasthenia gravis, hashimotos and severely low t-cells related to autoimmune disease. Then this past year I was diagnosed with autoimmune ear disease.

I started with health issues that progressed over the years---1964 and first diagnosis in 2002. I almost wore me, hubby and my care out with doctor appointments and it was bloody miserable trying to get diagnosed. I also made almost uncountable dentist appt. and infections, root canals, tooth extractions with resulting extraction of rest of teeth and dentures over a period of about 15 years.

Just to let you know that autoimmune diseases are hard to nail down. The biggest problem is we don't look sick and the issues we suffer with don't always show up. I never wore makeup or lipstick to the dr cause I didn't want to look healthy!!!

I would take time off at times just because I was just sick of going to the doctor and needed the rest. Then there is the fact that I had to keep working and that made life exhausting. All I can say is to just hang in there and keep on asking for a referral when you think you need to. The best thing I did was go to the University cause I got more attention and eventually things started to move faster. I did not get diagnosed at University but sort of indirectly. I finally have a bunch of great doctors. I have 7 specialists but don't see them all routinely. Some are once a year. Keep a list of your health issues and keep your head held high. Irish

[LisaInMidwest]

Thank you Irish and angel dancer. :-)

[Way2dry]

In 2013 my pcp suspected Sjogren's because of my dry mouth. My tests came back negative & he told me "Good news, you don't have Sjogren's". 

When my symptoms worsened, I thought I got lucky when I was able to get an appt. with the head of our local Sjogren's Clinic.  She wanted a lip biopsy but couldn't recommend anyone except for one Dr. but giggled & said "he's old", so I didn't do it. When my tests all came back negative, she told me I had some autoimmune thing going on, gave me a script for spit med, & told me to come back in a year...

My symptoms quickly worsened & I tried several other rheumys.  They don't really know what to do with Sjogren's.

I've pretty much given up on rheumatologists & I am working with my new pcp to deal with my most recent issue of a failing thyroid.  So frustrating to have this disease that no one takes seriously.

Good luck to you.  I hope you find a very good, caring doctor soon.